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Knowledge Database
• Slide Presentation for the lecture of: Steven Eidelman
University of Delaware, USA
• Topic of lecture...
What’s Wrong with Hostels, Villages, Intentional
Communities and, Yes, Institutions: An
Advocacy and Funders Viewpoint
Ste...
Size Matters!
SOME BACKGROUND
Article 25 of the Universal Declaration
of Human Rights
“Everyone has the right to a standard of
living adequate for the h...
"Where, after all, do universal human rights begin? In small places, close to home -
so close and so small that they canno...
From the Preamble to the U. N. Convention on
the Rights of People with Disabilities (CRPD)
“Reaffirming the universality,
...
The CRPD promotes community living
From the Preamble:
“(l) Recognizing the importance for persons with
disabilities of the...
The CRPD promotes community living
From the Preamble to the CRPD
“(l) Recognizing the importance for persons with
disabili...
If I understand the adults with
intellectual disability I know, it is up to
policymakers, organizations and
professionals ...
Despite Progress… USA
• ~ 169,000 people remain in large private and
state institutions in a country of ~319 million
peopl...
How We Got Here……
It all began with a rejection of
the Medical Model of Care in
the 1970’s
•It expressed itself in the move from
institution...
The Tale of Four Ideals
Normalization
Inclusion
Self-
Deter-
mination
1970’s 1980s
1990s
Supports
2000s
Slides adapted, wi...
Ideal 1 -- Illuminates
Institutions
Normalization
Large institutions are
exposed as places
that strip individuals
of their...
Ideal 1 + 2 -- Attack
Segregation
Inclusion
Normalization
+
“Home-like” and
“job-like” programs
are criticized
because the...
Ideals 1 + 2 + 3 -- Shift in
Power
Inclusion
Normalization
+
+
Self-Determination
For people to have
lives that they
choos...
Ideals 1 + 2 + 3 + 4– The
Supports Paradigm
Inclusion
Normalization
+
+
Self-Determination
For people to have
lives that t...
What Research Data Tells Us
What the Data Tells US
 2008-2009 National Core Indicators (US)
 N= 8,892 adult responses across 19 states
 Those livin...
What the Data Tells US
 2008-2009 National Core Indicators (US)
 N= 8,892 adult responses across 19 states
 Those livin...
What the Data Tells US
 Ticha (2012) from that same data set
showed that people living in
household of 1-3 people made
si...
What the Data Tells Us
 Residential size correlated with self-
reported satisfaction from two
different samples of 1,000+...
What the Data Tells Us
 Emerson and Robertson (UK), 2001,
studied 218 adults living in group homes
with 3 or fewer people...
What the Data Tells Us
 People in community-based
residences more likely to participate
in physical exercise that those i...
What the Data Tells Us
 Kozma, et. al. (UK, 2009) analysis of
21 studies – small generally offers
more choice and self de...
What the Data Tells Us
 Gardner, Carran and Taylor (US,
2005) in a study of accredited (By
CQL) organizations, showed tha...
What the Data Tells Us
 39 published studies examining
people leaving institutions and
moving to community services (Kim,...
What the Data Tells Us
 People in places of more than 6 have
fewer choices-both everyday choice
of activities and choice ...
What have we learned?
 People with
disability do
better outside of
institutions than
inside of them.
 This holds true
fo...
OBSTACLES, CHALLENGES
AND TOOLS
Now What?
The Precautionary Principle
 We know enough
 Scientific knowledge, especially studying
vulnerable people in long term su...
Formidable Factors
Limiting Change
 The very practices
and systems that
need to change are
the ones
developed, as
innovat...
Change is about people
and behavior...
not about bylaws, structure,
regulations, policies…it is
about vision and overcomin...
Why is it?
 We live in the age of
 But some still
promote congregate
school and residential
settings and even
institutio...
People are institutionalized due to
lack of resources and alternatives
 The “need” for long stay
institutionalization:
i...
One cannot be part of the
community while institutionalized
 Tasks relative to long stay institutions:
 Close Institutio...
Examples, regardless of size, of institutions
 Orphanages, state and private
institutions, nursing homes, hostels and
“sc...
There is nothing “Magic” about institutions,
day programs or segregated schools
 Magic is best left to magicians
 Bricks...
Deinstitutionalization is a Rectangle
Helping people leave long stay institutions
Building
Community
Capacity for
All
Prev...
People should have homes,
not homelike environments:
Home is a place where:
 You choose who you live with
 If someone as...
Community Based Care is Not A Place
 Deinstitutionalization has mostly been
about real estate.
 Level of Care (how much ...
Physical Presence is Not Enough –
Inclusion is More than Geography
 Making a House a Home is About
Control and Choosing w...
 Many of the programs developed in the past are now
the very programs which must now change.
 Physical presence in the c...
Mistakes to be corrected….
 Sheltered workshops
 Group homes where people are placed
 Segregated education
 Re-named i...
Saying to families that people are
going to live independently
The goal is interdependence, self governance and control of...
No one in this room lives
independently
We are all interdependent
Interdependence builds social capital
Social capital str...
What To Do???
We can’t stay
on this spot
We need to rethink what
we do – affirm our
values but resolutely
search for “valu...
To finish deinstitutionalization and
implement second order
development of community
inclusion, we can learn from our
mist...
The significant problems
we face can not be solved
at the same level of
thinking we were at when
we created them.
Albert E...
Steve’s Golden Rules of
Working with Families
 Start where the family is – all families are
unique
 Tell the truth
 Dem...
We are asking families to…
 Accept things they cannot see
 Leave things they know and may be
comfortable with
 Trust us...
Families need to know
 Public policy is changing because of the
research, changes in national policy and
the CRPD.
 Once...
We need to…
 Show and tell success stories
 Understand what is important to and
important for both families and
people w...
What the CRPD Does
1) It recognizes that all people with
disabilities have the right to live as
equal citizens in the comm...
To Assure Quality and Personalization
 Monitoring and Evaluation must be
independent from the provision of
services and o...
The Community for All Checklist, developed by the
Open Society Public Health Program lists steps
necessary for governments...
The Community for All
Checklist
Ten Steps
Israel should:
Step 1
Commit to transforming the system from
institutional services to community-based
services
Step 2
Provide explicit r...
Step 3
Develop a national strategy for
transforming the system from
institutional placements to community-
based services ...
Step 5
Develop links with experts (national and
international)
Step 6
Review legislation, policies and practices
relevant ...
Step 8
Ensure transparency and accountability
in the use of public funds
Step 9
Establish mechanisms for data collection
S...
Sources-Resources
 Home and Community-Based Services: Creating
Systems for Success at Home, at Work and in the
Community....
So given all our constraints, what now?
The future
ain't what it
used to be.
Yogi
Berra
The trouble with
our times is that...
Steven M. Eidelman
112 Alison Hall South
Newark, DE 19711
302-831-8536
sme@udel.edu
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Steven Eidelman: What`s Wrong with Hostels, Villages, Intentional Communities and, Yes, Institutions: An Advocacy and Funder`s Viewpoint - Slide presentation

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Steven Eidelman: What`s Wrong with Hostels, Villages, Intentional Communities and, Yes, Institutions: An Advocacy and Funder`s Viewpoint - Slide presentation

  1. 1. Knowledge Database • Slide Presentation for the lecture of: Steven Eidelman University of Delaware, USA • Topic of lecture: What`s Wrong with Hostels, Villages, Intentional Communities and, Yes, Institutions: An Advocacy and Funder`s Viewpoint • The lecture was given at Beit Issie Shapiro’s 6th International Conference on Disabilities – Israel • Year: 2015
  2. 2. What’s Wrong with Hostels, Villages, Intentional Communities and, Yes, Institutions: An Advocacy and Funders Viewpoint Steven M. Eidelman H. Rodney Sharp Professor of Human Services Policy and Leadership
  3. 3. Size Matters!
  4. 4. SOME BACKGROUND
  5. 5. Article 25 of the Universal Declaration of Human Rights “Everyone has the right to a standard of living adequate for the health and well-being of himself and his family, including food, clothing, housing, medical care and necessary social services.” (passed 12/10/48) People with disabilities not referenced We know that disability rights are human rights
  6. 6. "Where, after all, do universal human rights begin? In small places, close to home - so close and so small that they cannot be seen on any maps of the world. Yet they are the world of the individual person; the neighborhood he lives in; the school or college he attends; the factory, farm, or office where he works. Such are the places where every man, woman, and child seeks equal justice, equal opportunity, equal dignity without discrimination. Unless these rights have meaning there, they have little meaning anywhere. Without concerted citizen action to uphold them close to home, we shall look in vain for progress in the larger world." Eleanor Roosevelt March 27, 1958 “IN YOUR HANDS: A Guide for Community Action for the Tenth Anniversary of the Universal Declaration of Human Rights”
  7. 7. From the Preamble to the U. N. Convention on the Rights of People with Disabilities (CRPD) “Reaffirming the universality, indivisibility and interdependence of all human rights and fundamental freedoms and the need for persons with disabilities to be guarantied their full enjoyment without discrimination” Institutions = Discrimination Segregation = Discrimination Not having choices = Discrimination
  8. 8. The CRPD promotes community living From the Preamble: “(l) Recognizing the importance for persons with disabilities of their individual autonomy and independence, including the freedom to make their own choices” You are not part of the community while in a long-stay institution by whatever name it is called! Autonomy and increased independence generally do not happen in congregate settings Institutions do not make you safe. Some people need help making choices due to lack of experience due to capacity
  9. 9. The CRPD promotes community living From the Preamble to the CRPD “(l) Recognizing the importance for persons with disabilities of their individual autonomy and independence, including the freedom to make their own choices” You are not part of the community while in a long-stay institution. Israel – and other nations - cannot afford three tier systems-institutions, segregated community and inclusive community.
  10. 10. If I understand the adults with intellectual disability I know, it is up to policymakers, organizations and professionals to: move from facility and program-based services to individually designed and controlled services develop policies and programs to support families However families in their culture wish to be supported What does the CRPD mean for people with intellectual disability?
  11. 11. Despite Progress… USA • ~ 169,000 people remain in large private and state institutions in a country of ~319 million people • (Israel has 9-10,000 in a country of 8 million people) – They are trapped there due to the political clout of employee unions, rural legislators and families who have guardianship over them • 11 States have no public institutions
  12. 12. How We Got Here……
  13. 13. It all began with a rejection of the Medical Model of Care in the 1970’s •It expressed itself in the move from institutional care to community care. •Some things that were thrown out, especially the thoughtful participation of physicians, dentists and nurses and must be brought back, albeit differently, into our thinking and practice
  14. 14. The Tale of Four Ideals Normalization Inclusion Self- Deter- mination 1970’s 1980s 1990s Supports 2000s Slides adapted, with permission from Val Bradley, HSRI
  15. 15. Ideal 1 -- Illuminates Institutions Normalization Large institutions are exposed as places that strip individuals of their humanity and connection with society; community system is the vision
  16. 16. Ideal 1 + 2 -- Attack Segregation Inclusion Normalization + “Home-like” and “job-like” programs are criticized because they enforce segregation and do not lead to community membership
  17. 17. Ideals 1 + 2 + 3 -- Shift in Power Inclusion Normalization + + Self-Determination For people to have lives that they choose and to be supported in ways that facilitate their preferences, people must have control over the distribution of resources.
  18. 18. Ideals 1 + 2 + 3 + 4– The Supports Paradigm Inclusion Normalization + + Self-Determination For people to have lives that they choose and to be supported in ways that facilitate their preferences, we need to understand the what and how of supports… Supports are distinct from programs. + Supports
  19. 19. What Research Data Tells Us
  20. 20. What the Data Tells US  2008-2009 National Core Indicators (US)  N= 8,892 adult responses across 19 states  Those living in groups of 1-3 run by NGOs reported significantly more everyday choice than those in homes of 7-15 or those above 16 people
  21. 21. What the Data Tells US  2008-2009 National Core Indicators (US)  N= 8,892 adult responses across 19 states  Those living in groups of 1-3 run by NGOs reported significantly more everyday choice than those in homes of 7-15 or those above 16 people
  22. 22. What the Data Tells US  Ticha (2012) from that same data set showed that people living in household of 1-3 people made significantly more choices in service settings and providers than those is 4-6 or 7+  Lakin (2008) in a study in 5 US states showed that smaller residential sizes associated with greater choice
  23. 23. What the Data Tells Us  Residential size correlated with self- reported satisfaction from two different samples of 1,000+ adults  People in larger places, greater than 6 more likely to report loneliness and less likely to say they liked where they lived compared to people in settings of 6 or fewer  (Stancliffe 2007 and 2009)
  24. 24. What the Data Tells Us  Emerson and Robertson (UK), 2001, studied 218 adults living in group homes with 3 or fewer people had more inclusive and larger social networks that those in group homes of 4-6 people  Emerson, et. al. in 2000 n=500, smaller size significant predictor of more frequent participation in community activities, controlled for characteristics of residents
  25. 25. What the Data Tells Us  People in community-based residences more likely to participate in physical exercise that those in campus/cluster housing (Emerson, 2004)  Increased risk of abuse from co- residents in larger group homes (Emerson, 2001)
  26. 26. What the Data Tells Us  Kozma, et. al. (UK, 2009) analysis of 21 studies – small generally offers more choice and self determination than large  McConkey, Ireland, 2007, People in supported living more social inclusion than those in campus style settings
  27. 27. What the Data Tells Us  Gardner, Carran and Taylor (US, 2005) in a study of accredited (By CQL) organizations, showed that people in independent living situations, controlling for level of disability, attained more outcomes than those is structured, supervised settings.
  28. 28. What the Data Tells Us  39 published studies examining people leaving institutions and moving to community services (Kim, Larson and Lakin, 1999, USA) demonstrates that people do better outside of institutions than in them  Studies examined were from 1980-1999  People usually do better out than in
  29. 29. What the Data Tells Us  People in places of more than 6 have fewer choices-both everyday choice of activities and choice in where they live (Ticha, et. al. 2012) (USA)  People in small homes-1-8 adults more choice and self determination compared to campus/cluster homes (Emerson, 2000, UK, Perry and Felce, 2005, US n=154)
  30. 30. What have we learned?  People with disability do better outside of institutions than inside of them.  This holds true for all levels of disability.  Community Supports can be developed in a cost- effective manner.
  31. 31. OBSTACLES, CHALLENGES AND TOOLS Now What?
  32. 32. The Precautionary Principle  We know enough  Scientific knowledge, especially studying vulnerable people in long term supports is, by definition, limited  No credible evidence supporting segregation  Long history of bad outcomes  Good public policy calls for going with what we currently understand while continuing to study
  33. 33. Formidable Factors Limiting Change  The very practices and systems that need to change are the ones developed, as innovative, by the current generation of leaders. Walt Kelly, Pogo, Earth Day, 1970
  34. 34. Change is about people and behavior... not about bylaws, structure, regulations, policies…it is about vision and overcoming obstacles
  35. 35. Why is it?  We live in the age of  But some still promote congregate school and residential settings and even institutions as service models ……..villages, gated communities, etc.
  36. 36. People are institutionalized due to lack of resources and alternatives  The “need” for long stay institutionalization: is an artificial construct. no research basis. no research basis supporting institutions over well executed community inclusion.
  37. 37. One cannot be part of the community while institutionalized  Tasks relative to long stay institutions:  Close Institutions  Build community capacity for all  Increase NGO (provider) and governmental capacity through training and technical assistance  Support Families  Enhance Communities  Prevent Institutionalization  School for all children  Education of policymakers  “Second Order” Deinstitutionalization  Moving out of large non-governmental residential and day programs
  38. 38. Examples, regardless of size, of institutions  Orphanages, state and private institutions, nursing homes, hostels and “schools” for people with intellectual disability.  Sheltered workshops, segregated schools, and other congregate settings.  Any setting that serves to separate people from their communities
  39. 39. There is nothing “Magic” about institutions, day programs or segregated schools  Magic is best left to magicians  Bricks and mortar, wood and tile, glass and carpet do not make a meaningful life  Meaningful lives are based on relationships, the ability to experience life and non- structured human interaction  You do not have a meaningful life in a large congregate facility surrounded only by paid caretakers
  40. 40. Deinstitutionalization is a Rectangle Helping people leave long stay institutions Building Community Capacity for All Preventing Institutionalization and Closing Admissions Supporting Families
  41. 41. People should have homes, not homelike environments: Home is a place where:  You choose who you live with  If someone asks, "Whose place is this?", people who live in their own homes say "mine" or "ours“  The people who live there have keys (people who don’t, don’t)  People don't have to ask permission to go out, to eat when & what they want, make phone calls, have people visit, have pets, etc.
  42. 42. Community Based Care is Not A Place  Deinstitutionalization has mostly been about real estate.  Level of Care (how much support people need) has been mostly tied to real estate also, not how people want to live or what they need.  Intensity of supports* allows one to plan, regardless of need or the place where supports are delivered. *http://www.siswebsite.org/page.ww?section=Product+Info&name=Product+Info
  43. 43. Physical Presence is Not Enough – Inclusion is More than Geography  Making a House a Home is About Control and Choosing with Whom You Live, and Where  You cannot locate inclusion on a GPS, though you may be able to locate segregation and isolation
  44. 44.  Many of the programs developed in the past are now the very programs which must now change.  Physical presence in the community ≠ integration and inclusion.  “When is a house a home?”  Insufficient resources to maintain three levels of programs  Large Public/Private Institutions  Medium size facilities/older community programs  Community supports and services We Also Must Prepare for Second Order Deinstitutionalization: The Transformation of Existing Community Services
  45. 45. Mistakes to be corrected….  Sheltered workshops  Group homes where people are placed  Segregated education  Re-named institutions  Programs that separate people from the communities in which they live  Rejection of medical professionals  Others?
  46. 46. Saying to families that people are going to live independently The goal is interdependence, self governance and control of the major variables in your life.
  47. 47. No one in this room lives independently We are all interdependent Interdependence builds social capital Social capital strengthens communities Talking about independent living scares families It scares me
  48. 48. What To Do??? We can’t stay on this spot We need to rethink what we do – affirm our values but resolutely search for “value” This slide part of a series of slides- Sustainable Futures -A Joint Project of The Arc of the United States and HSRI
  49. 49. To finish deinstitutionalization and implement second order development of community inclusion, we can learn from our mistakes, and the mistakes of others.
  50. 50. The significant problems we face can not be solved at the same level of thinking we were at when we created them. Albert Einstein
  51. 51. Steve’s Golden Rules of Working with Families  Start where the family is – all families are unique  Tell the truth  Demonstrate integrity  Provide information  Answer questions  Give families some time  Project confidence and competence  But be firm – People with disabilities are the ones whose human rights are at issue
  52. 52. We are asking families to…  Accept things they cannot see  Leave things they know and may be comfortable with  Trust us  We were lying then or are we lying now?  Have faith that the future can be better
  53. 53. Families need to know  Public policy is changing because of the research, changes in national policy and the CRPD.  Once the decision is made to have people leave institutions we do not want to go back  People who receive support provided through or by government will see things change  Change is hard but the government is moving forward
  54. 54. We need to…  Show and tell success stories  Understand what is important to and important for both families and people with disabilities  Communicate, communicate, communicate  Listen, Listen, Listen  To families and people with disabilities  Fix things when they break  Solve problems
  55. 55. What the CRPD Does 1) It recognizes that all people with disabilities have the right to live as equal citizens in the community  Israel, by signing and ratifying, has agreed to this right 2) The CRPD calls for governments to take action  To review and change policies to support families  To put in place plans and activities to get people out of institutions
  56. 56. To Assure Quality and Personalization  Monitoring and Evaluation must be independent from the provision of services and of licensure  Free of conflict of interest  Accountable to people served and government  Both announced and unannounced  Ability to respond to and monitor compliance to complaints/resolutions  Direct access to interview people in programs
  57. 57. The Community for All Checklist, developed by the Open Society Public Health Program lists steps necessary for governments to implement Article 19 Israel has three clear requirements for Article 19 1) To formally recognize the right of people with disabilities to live in the community 2) To take effective and appropriate measures to have them enjoy that right, with choices equal to other Israelis 3) To take effective and appropriate measures to make sure people are full participants in community life What does the Convention mean for the National Government?
  58. 58. The Community for All Checklist Ten Steps Israel should:
  59. 59. Step 1 Commit to transforming the system from institutional services to community-based services Step 2 Provide explicit recognition of the right to community living for all (the right of all persons to live in the community, “with choices equal to others”)
  60. 60. Step 3 Develop a national strategy for transforming the system from institutional placements to community- based services and supports Step 4 Establish mechanisms to enable the participation of civil society, particularly people with disabilities and their families
  61. 61. Step 5 Develop links with experts (national and international) Step 6 Review legislation, policies and practices relevant to the implementation of Article 19 Step 7 Review existing services for people with disabilities
  62. 62. Step 8 Ensure transparency and accountability in the use of public funds Step 9 Establish mechanisms for data collection Step 10 Establish mechanisms for periodic review of the action plan and national strategy
  63. 63. Sources-Resources  Home and Community-Based Services: Creating Systems for Success at Home, at Work and in the Community. U. S. National Council on Disability, 2015 http://www.ncd.gov/publications/2015/02242015/  Outcomes by Size of Community Residence, Summary of the Literature, Eunice Kennedy Shriver Center, May 1, 2014  University of Minnesota Rehabilitation Research and Training Center on Community Living, http://rtc.umn.edu/rtc/  The Council on Quality and Leadership, http://www.c-q- l.org/  Costs and Outcomes of Community Services for People with Intellectual Disabilities, Stancliffe and Lakin, 2005 Paul Brookes Publishers
  64. 64. So given all our constraints, what now? The future ain't what it used to be. Yogi Berra The trouble with our times is that the future is not what it used to be. Ambroise Paul Toussaint Jules Valery 1871-1945
  65. 65. Steven M. Eidelman 112 Alison Hall South Newark, DE 19711 302-831-8536 sme@udel.edu

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